What It's Like To Participate in the U.S.'s Largest Lifestyle Intervention Trial

No Country for Old People, a documentary from filmmaker Susie Singer Carter and former federal prosecutor and US Attorney Rick Mountcastle, investigates widespread neglect and systemic failures in nursing facilities. Singer Carter tells a personal story about her mother, who lived with Alzheimer’s disease and received inadequate care in a five-star facility. Mountcastle, known for prosecuting Purdue Pharma for its role in the opioid crisis, connects his legal experience exposing corporate misconduct to troubling practices he uncovered in the long-term care industry. Together, they highlight how residents with dementia and other disabilities are often silenced, overlooked, or neglected by a system that profits from their vulnerability.In this Live Talk with Being Patient’s founder Deborah Kan, Carter and Mountcastle share the stories behind the film, including Singer Carter’s firsthand account of her mother’s decline in a care facility, and Mountcastle’s insights into how legal and corporate structures perpetuate exploitation. As advocates of the ROAR(Respect, Oversight, Advocacy, and Reform for Long-Term Care) movement, they said they intend their film to give voice to the voiceless and push for accountability. 

When Alice Bailey was diagnosed with early-onset Alzheimer’s at 56, some of the challenges were all too familiar. She had witnessed her mother’s experience with Alzheimer’s years earlier, and recognized some of the same gaps in care and communication with her diagnosis. Receiving no resources to help her process her diagnosis, she leaned on family, faith, and community to find support. Today, she’s a member of the Council of Black Dementia Minds, where she shares her story and helps build awareness about dementia in communities that are often underserved.In this Live Talk with Being Patient’s Mark Niu, Bailey reflects on the moment she knew something was wrong with her memory, the frustrations she faced in the healthcare system, and the steps she has taken to live well despite her diagnosis. From addressing the stigma of early-onset Alzheimer’s to advocating for greater awareness in the Black community, she continues to use her voice to inform others.

Growing evidence shows that Alzheimer’s risk is shaped not only by genetics but also by culture, environment, and lifestyle — and researchers say these differences may hold the key to better prevention and treatment.Dr. Sid O’Bryant, professor of pharmacology and neuroscience at the University of North Texas, is the principal investigator of the Health & Aging Brain Study – Health Disparities (HABS-HD), the most comprehensive Alzheimer’s study ever conducted across African American, Hispanic, and non-Hispanic white communities. His approach brings research into diverse communities often left out of large-scale studies, ensuring that findings reflect the populations most at risk.In this conversation with Being Patient’s Mark Niu, O’Bryant explained how factors like diabetes, hypertension, environment, and even social support networks shape brain health. He explained that these findings show why Alzheimer’s cannot be treated with a “one size fits all” model. Instead, precision medicine — tailoring prevention and treatment strategies to an individual’s genetic, cultural, and lifestyle background — could transform how we approach brain health and Alzheimer's treatments.

What does it feel like to take part in the largest lifestyle intervention trial in the United States?In this conversation, Patty Kelly and Phyllis Jones share personal stories about how Alzheimer’s disease has shaped their families — and why they chose to get involved in groundbreaking research aimed at preventing or slowing cognitive decline.If you loved this video, visit our website to find more of our Alzheimer’s coverage and subscribe to our newsletter: https://www.beingpatient.com/Follow Being Patient: Twitter: https://twitter.com/Being_Patient_Instagram: https://www.instagram.com/beingpatientvoices/Facebook: https://www.facebook.com/beingpatientalzheimersLinkedIn: https://www.linkedin.com/company/being-patientBeing Patient is an editorially independent journalism outlet for news and reporting about brain health, cognitive science, and neurodegenerative diseases. In our Live Talk series on Facebook, former Wall Street Journal Editor and founder of Being Patient, Deborah Kan, interviews brain health experts and people living with dementia. Check out our latest Live Talks: https://www.beingpatient.com/category/video/

This Live Talk is produced by Being Patient with support provided by Cognito Therapeutics. Learn more about Cognito's HOPE Study:https://www.hopestudyforad.com/ – Researchers and technology companies are looking into whether non-invasive, non-drug therapies — like electromagnetic, visual, and auditory stimulation — can treat Alzheimer’s disease. So, what does the science say about these emerging therapies? What can they do for the brain?Dr. Michelle Papka, founder and president of the Cognitive and Research Center of New Jersey (CRCNJ), joined Being Patient Live Talks to discuss emerging technology-assisted non-invasive interventions for Alzheimer’s. Papka is a neuropsychologist, psychotherapist, and researcher with more than 30 years of combined experience working in aging, Alzheimer’s, and dementia, and her own private clinical practice in New Jersey. She’s also an active public speaker, invited editor, grant reviewer, consultant, and committee member of multiple specialized organizations and publications on aging and Alzheimer’s.For over 15 years, she has served as the principal investigator on industry-sponsored clinical trials for Alzheimer’s disease and age-related cognitive impairment. Presently, she’s the principal investigator on Cognito’s HOPE study, which is testing the SPECTRIS AD device’s efficacy and safety for people living with Alzheimer’s, and an advisor to Cognito. This device uses visual and auditory stimulation to create gamma wave activity in the brain. Listen to the live talk to learn her perspective on non-invasive interventions for Alzheimer’s disease and what the future may hold for these treatments.

This podcast is part of the Journey to Diagnosis series, produced by Being Patient with support provided by Eli Lilly. Learn more about Journey to Diagnosis: https://www.beingpatient.com/journey-to-diagnosis/ Zelik “Zel” Bocknek joined Being Patient Live Talks with his wife, Gail Bocknek, to discuss his experience with diagnosis and living with early-stage Alzheimer’s disease. Zel, a retired business owner, started experiencing memory problems at age 84. He was later diagnosed with early-stage Alzheimer’s disease and is passionate about sharing his experience with diagnosis and living with the disease with others. He also participated in the lecanemab clinical trial and spoke about his experience with Maria Shriver on the TODAY show. Now 90, he continues taking the medication and enjoys downhill skiing, painting, and volunteering at the Toronto Zoo. Zel and Gail have lived in Toronto, Canada, for 60 years. They love to spend time with their three children and six grandchildren.

Precision medicine is a medical approach that considers a patient’s genes, environment, and lifestyle. In the realm of Alzheimer’s disease, experts are pushing for using this approach to improve diagnosis, treatment, and our understanding of the condition. But what does precision medicine for patients with Alzheimer’s disease and other dementias look like? The Alzheimer’s Drug Discovery Foundation (ADDF)’s Dr. Howard Fillit joins Being Patient Live Talks to discuss precision medicine and its potential in Alzheimer’s diagnosis and care. Fillit is an award-winning geriatrician, neuroscientist, and innovative philanthropy executive who has led the ADDF since its founding. He has authored or co-authored over 300 publications and is the senior editor of Brocklehurst’s Textbook of Geriatric Medicine and Gerontology. He has held faculty positions at Rockefeller University, the SUNY-Stony Brook School of Medicine, and the Cornell University School of Medicine. Fillit also maintains a limited private practice in consultative geriatric medicine focusing on Alzheimer’s disease and related dementias.

This video is part of the Journey to Diagnosis series, produced by Being Patient with support provided by Eli Lilly. Learn more about Journey to Diagnosis: https://www.beingpatient.com/journey-to-diagnosis/ Award-winning playwright and performer Samuel A. Simon joined Being Patient live talks to discuss his experience with Alzheimer’s and developing and performing his autobiographical play about his diagnosis journey, “Dementia Man, an Existential Journey.” Before becoming involved in theatre as a playwright and performer, Simon worked as a lawyer for Ralph Nader’s first advocacy group. He then spent 25 years as head of a public affairs firm. After he sold his firm, he became involved with theatre, with his first play, “The Actual Dance, Love’s Ultimate Journey Through Breast Cancer,” which has toured from 2013 to the present. In 2021, this play was turned into an award-winning biography. In 2018, Simon was diagnosed with mild-cognitive impairment and in 2021 with early-stage Alzheimer’s. He used his experience in his previous play to develop “Dementia Man, an Existential Journey.” In the play, he shares his “existential journey” as he navigates diagnosis and living with dementia. He also imagines a future for the millions of others living with the disease and what that would look like. Directed by Thadd McQuade with dramaturgy by Gabrielle Maisels, “Dementia Man, An Existential Journey” made its world premiere at Capital Fringe in Washington D.C. in July 2023 and is the recipient of the 2023 Dementia Arts Impact Award by the Dementia Spring Foundation. He continues to tour performances of the play throughout the United States. Simon lives in Mclean, Virginia, with his wife Susan. They have two children and four grandchildren. He is under medical treatment for Alzheimer’s disease and took part in a clinical trial.

This podcast is part of the Diversity + Dementia series, produced by Being Patient with support provided by Eisai inc. Learn more about Diversity + Dementia: https://www.beingpatient.com/diversity-and-dementia/ Simone E. Morris and her daughter Millie Walton joined Being Patient Live Talks to discuss their book Remember Me Grammy P, a children’s book about dementia. Morris’s late mother, Patricia D. Edwards, or “Grammy P,” lived with dementia, and the book traces how their family dealt with diagnosis, care, and discussions around the disease. As a Black caregiver experienced in providing training on diversity, equity, and inclusion, Morris will also discuss dementia care and access in marginalized communities. Morris is a coach, trainer, speaker, podcaster, and author passionate about inclusion. Wanting to help other families on the dementia journey, she wrote Remember Me, Grammy P, in collaboration with her daughter as a tribute to her mother. Walton is a fourth grader passionate about reading, art, soccer, acting, and singing. While the book is illustrated by Audeva Joseph, some of Walton’s artwork is featured in Remember Me, Grammy P.

Award-winning Alzheimer’s and dementia educator and best-selling author Dr. Macie P. Smith joined Being Patient Live Talks to discuss her latest book, “A Dementia Caregiver Called to Action: The Journey.” In the context of her experience as an educator and a licensed gerontology social worker, she’ll also speak to the caregiving needs specific to Black families and Black communities. Smith has over 22 years of experience coordinating care for aging and vulnerable populations. As the author of past books including, “A Dementia Caregiver’s Guide to Care: Just Ask Dr. Macie,” her caregiving insights and guidance have been published in national and international professional journals. She’s also an advisory board member with Leeza’s Care Connection. Watch the full interview to hear some of Dr. Macie’s top dementia care insights and how we can better support caregivers in Black communities.